Development Of A Health-related Quality Of Life Instrument For Children With Cerebral Palsy
Funder
National Health and Medical Research Council
Funding Amount
$114,000.00
Summary
This project aims to develop and test a measure of quality of life for children with cerebral palsy (CP). This is a new project of international significance that has been recommended as the highest research priority of the United Cerebral Palsy Association with the strong support of CP researchers and clinicians internationally. CP remains the most common cause of physical disability in childhood, with an incidence of 2-2.0-2.5 per 1,000 live births. Described as a 'non-progressive motor impair ....This project aims to develop and test a measure of quality of life for children with cerebral palsy (CP). This is a new project of international significance that has been recommended as the highest research priority of the United Cerebral Palsy Association with the strong support of CP researchers and clinicians internationally. CP remains the most common cause of physical disability in childhood, with an incidence of 2-2.0-2.5 per 1,000 live births. Described as a 'non-progressive motor impairment of central origin recognised in infancy or childhood', CP presents as a static lesion on the brain characterised by progressive muscoskeletal deformity. Its impact on children and families is profound, resulting in extensive and life-long burden of care for families, and significant limitations to children's development and wellbeing. The management of the neuromuscular sequelae and health problems is a considerable cost to the health system because children require frequent visits for medical management, surgical procedures and rehabilitation. Trials of CP management effectiveness are hampered by the absence of patient outcome measures. Whilst new treatment options aim to provide substantial improvements in impairment and functioning they have disadvantages. For example, spasticity management includes Botulinum toxin A and intrathecal baclofen, both may improve function but are costly and invasive; treatments for ambulation (multi-level orthopaedic surgery) offer improved gait and mobility but require extensive rehabilitation; treatments for severe eating difficulties and poor growth (gastrostomy) may improve survival but result in aggravation of gastro-oesophageal reflux; and surgery for intractable epilepsy may improve seizure disorder but result in functional deficits. Quality of life is now a mandatory component of clinical trial research; valid and reliable tools sensitive to detecting change are urgently required.Read moreRead less
A Randomised Control Trial Of Non-specific Clinical Management Versus CBT In Chronic Anorexia Nervosa
Funder
National Health and Medical Research Council
Funding Amount
$555,843.00
Summary
Anorexia nervosa (AN) is a serious mental illness that usually starts in adolescence and often runs a chronic course. With an estimated prevalence rate between 0.5% and 3.7% of women, and up to 50% remaining chronically ill, the illness poses a disproportionate burden on health and social services. AN has inpatient costs alone that exceed that for schizophrenia. Chronic AN has the highest mortality rate of any mental illness. Chronic AN patients are known for their ambivalence about engaging in ....Anorexia nervosa (AN) is a serious mental illness that usually starts in adolescence and often runs a chronic course. With an estimated prevalence rate between 0.5% and 3.7% of women, and up to 50% remaining chronically ill, the illness poses a disproportionate burden on health and social services. AN has inpatient costs alone that exceed that for schizophrenia. Chronic AN has the highest mortality rate of any mental illness. Chronic AN patients are known for their ambivalence about engaging in treatment and poor motivation to change their eating disorder behaviours. They often fail to respond to traditional treatments and develop a history of negative treatment experiences and repeated treatment failures. A new approach is needed to reduce both the personal suffering and the burden of the illness on social and medical services. To date, there has been little scientific investigation into the development of specific treatment for those patients with chronic AN. This study will trial a recently manualised therapy - non-specific supportive clinical management - which initial evidence suggests may hold promise for chronic AN because it offers a more indirect, motivationally-matched approach. This treatment will be compared to the establishment therapy Cognitive Behavioural Therapy. Patients will be randomly allocated to one of the two treatment conditions and will receive 40 sessions over 12 months. They will be thoroughly assessed prior to during and after they have completed treatment and followed up for 6 months. This is the worlds first trial of a psychological treatment for chronic AN; it is hoped the study will establish an effective treatment for this debilitating and expensive illness. Further, as the project aims to explore the core, but often over-looked, feature of AN - poor motivation for recovery - it will also be in a position to shed light on the deep psychological processes that maintain this illness.Read moreRead less
Improving Patient-important Outcomes In Haemodialysis Through Validation And Implementation In Registries And Pragmatic Clinical Trials
Funder
National Health and Medical Research Council
Funding Amount
$408,082.00
Summary
Haemodialysis is the most common treatment for kidney failure but is associated with poor survival, high symptom burden and drastically reduced quality of life. Research often does not address these patient-important outcomes, thereby limiting our ability to discover effective interventions. This program aims to improve haemodialysis outcomes that are critically important to patients and clinicians through validation and implementation in clinical practice, registries and clinical trial.
Quantifying The Burden Of Systemic Sclerosis In Australia: From Data Linkage To Patient Reported Outcomes
Funder
National Health and Medical Research Council
Funding Amount
$81,976.00
Summary
Systemic sclerosis (SSc) is a rare autoimmune disease with the potential to cause significant physical, financial and psychosocial burden on patients, their family members and wider community. The true ‘burden’ of SSc in Australia is unknown. My study aims to quantify this burden of disease and use our results to advocate for appropriate allocation of resources with the ultimate goal of improving patient outcomes and reducing the financial and human costs of this chronic rare disease.
Efficacy And Safety Of Vertebroplasty For Treatment Of Painful Osteoporotic Spinal Fractures: A Randomised Trial
Funder
National Health and Medical Research Council
Funding Amount
$586,250.00
Summary
Painful spinal or vertebral fractures are a substantial and growing public health problem and are a burden on the health care system. In Australia, 20-25% of women and 15-20% of men over the age of 50 will develop one or more fractures of their spine in their lifetime. Up to a half of these fractures will result in severe pain and disability. While the fractures generally heal within weeks or a few months, some are so painful that they require narcotic pain control, hospitalisation, and-or long- ....Painful spinal or vertebral fractures are a substantial and growing public health problem and are a burden on the health care system. In Australia, 20-25% of women and 15-20% of men over the age of 50 will develop one or more fractures of their spine in their lifetime. Up to a half of these fractures will result in severe pain and disability. While the fractures generally heal within weeks or a few months, some are so painful that they require narcotic pain control, hospitalisation, and-or long-term nursing home care. Other problems include chronic pain, spinal deformities, loss of height and mobility and restricted breathing. Vertebroplasty is a new procedure consisting of injection of a type of 'bone cement' into the vertebrae to mend the break. It is an exciting treatment because for some people, this results in an immediate and sustained improvement in pain. Although rare, complications such as rib fracture, cement leakage and fractures in other vertebrae do occur. One particular concern is that the mechanical changes to the spine caused by the bone cement may cause long-term complications such as an increased risk of future fractures of treated or adjacent vertebrae. So far, there is very little evidence of the efficacy and safety of this new technology. Importantly, it has not been compared with usual medical care for fractures. In medical research it can be difficult to properly evaluate an exciting and 'apparently' effective treatment that doctors and patients demand. The main aim of this project is to determine whether vertebroplasty is an effective and safe treatment compared to usual medical care. We have a unique opportunity to evaluate vertebroplasty through a strong collaborative effort between the 3 centres currently offering this procedure in Melbourne. If vertebroplasty can be demonstrated to be an effective, safe and cost-effective treatment for painful osteoporotic spinal fractures this will be a valuable addition to current treatment options.Read moreRead less
Striking The Balance: Combining Best Patient Outcomes And Cost-effective Interventions To Manage Cardiovascular Disease
Funder
National Health and Medical Research Council
Funding Amount
$782,370.00
Summary
This research will combine effective patient outcomes with strategic spending of health dollars. Through detailed analyses of current and recent clinical trials on cardiovascular disease, this project will identify treatments that provide the most benefit to patients’ quality of life and, crucially, will also be the most cost-effective to fund. This will pave the way for similar processes to be used in other areas of health to develop cost-effective healthcare programs for vulnerable groups.
Interaction Of Genetic And Environmental Risk Factors In Eye Disease
Funder
National Health and Medical Research Council
Funding Amount
$456,641.00
Summary
I aim to discover the genetic risk factors associated with a debilitating infection of the front of the eye caused by an amoeba, and associated with water use and contact lenses; and dry eye disease, a condition affecting over 20% of the elderly, and has significant affects on quality of life and functioning. The relationship of genetic and environmental factors will lead to identification of at risk populations, novel treatment paradigms and more sophisticated diagnostic techniques.
Epidemiology, Costs And Clinical Outcomes Of Inflammatory Bowel Disease In Victoria
Funder
National Health and Medical Research Council
Funding Amount
$66,881.00
Summary
The inflammatory bowel diseases, Crohn's disease and ulcerative colitis, are chronic inflammatory disorders of the gastrointestinal tract. The number of people in Australia with these conditions is unknown and the impact of illness is also poorly defined. This research aims to establish the number of people developing these conditions in a region of Australia. In addition the impact in terms of personal and health economic costs, quality of life and psychological effect will be determined.